Wednesday, September 9, 2009

Wednesday, September 9, 2009

Peter took this photo of Mattie about two weeks ago when Mattie was sleeping on our couch. It is one of my favorite photos of Mattie, and to me captures his angelic face. Hope you enjoy it too!

I would like to thank my former student, Betsy, for sending me this poem!

Poem from Nicholas Evans, The Smoke Jumper, titled "Walk Within You"

If I be the first of us to die,
Let grief not blacken long your sky.
Be bold yet modest in your grieving,
There is a change but not a leaving.
For just as death is part of life,
The dead live on forever in the living.
And all the gathered riches of our journey,
The moments shared, the mysteries explored,
The steady layering of intimacy stored,
The things that made us laugh or weep or sing,
The joy of sunlit snow or first unfurling of the spring,
The wordless language of look and touch,
The knowing,
Each giving and each taking,
These are not flowers that fade,
Nor trees that fall and crumble,
Nor are they stone,
For even stone cannot the wind and rain withstand,
And might mountain peaks in time reduce to sand.
What we were, we are
What we had, we have.
So when you walk the woods where once we walked together,
And scan in vain the dappled bank beside you for my shadow,
Or pause where we always did upon the hill to gaze across the land,
And spotting something, reach by habit for my hand,
And finding none, feel sorrow start to steal upon you,
Be still.
Close your eyes.
Breathe.
Listen for my footfall in your heart.
I am not gone, but merely walk within you.

As of today, I have to acknowledge the fact that the blog and the nature of the blog has profoundly changed. The blog was originally created to inform you about Mattie's day, his condition, and his treatment. However, over time the blog evolved and in a way gave birth to family story that captured the hearts, minds, and souls of a community. A community that I would be lost without, a community that wasn't afraid to walk through our painful days and NIGHTS, and a community that has shown me that with love and compassion wonderful things can happen even in crisis. Today is the first day I am writing, but I am not reporting about Mattie. I have no Mattie reactions, stories, or reflections of his day. This in and of itself is VERY upsetting, but I decided that I would continue the blog through Mattie's funeral, and then assess what I will do after that point. I have no idea what I will be writing about, or how I will be feeling as Mattie's death continues to hit me. However, in the mean time, I am honored that many of you want me to continue to write, and that you are willing to support us through our grieving process.

I had a very hard time going to sleep last night, and Peter had a hard time staying asleep. Our bodies have been profoundly changed from living in a PICU, but also living with a very sick child who was up every two hours at night. Though Peter and I went to bed at different times, one thing was consistent, we both woke up crying. We are surrounded by Mattie's things, and at times we almost have the sense that Mattie is with us. Peter and I are so USED to caring and meeting Mattie's needs 24/7, that is it VERY hard for us to now relax. We are that stressed out, and that type of intensity, doesn't go away with one night of sleep. We have many months of physical and emotional recovery ahead of us. I sat in Mattie's room this morning and just looked around and was flooded with all of his creations and toys. It is hard to believe that he is gone. I know he is gone, but I can't accept that he is gone.

Peter and my dad went to the Funeral Home today to make arrangements for Mattie. Peter and my dad left with a very positive impression of the person they worked with, and I will return with them tomorrow, to look at urns and to discuss lifegem (creating a diamond from Mattie's ashes), as well as memory glass (glass jewelry that incorporates Mattie's ashes into it). However, Peter and my dad told me that they saw many ways to display ashes, it doesn't have to be in an urn. It can be in a sun dial, a bird feeder, or a fountain for example. So as Mattie always taught me, I have to think outside the box (literally)! I am happy Peter had my dad's help and then they went out to lunch together.

As I was getting dressed today, I debated what necklace to wear. For the past 13 months I have been wearing Alison's Hope necklace. I clung to that necklace and it brought me strength and courage on some of my darkest days. Yet today I felt compelled to wear something that reminded me of Mattie. So I pulled out the necklace he made for me at the Lombardi Clinic. I featured a picture of it on the blog recently, it has different glass animal beads on it. Any case, wearing this necklace today reminded me of Mattie and the incredible love we have for each other. Mattie and I were clearly mother and son, but Mattie and I in a way had a deeper and more spiritual connection. We just understood each other, and with his death, I feel like a part of me has died with him. Mattie looked like me, acted like me, and we had similar personalities. So how is it possible to lose such a force and not be affected?

My mom and I went out to lunch today with my friends Ellen (Charlotte's mom) and Christine (Campbell's mom). I never thought I would be doing this after Mattie's death. Instead I pictured myself balled up in a corner or not leaving my bed. That could still happen, and I may have days like this ahead, but today, getting out of the house was necessary. Getting flooded at home with Mattie's memory can be overwhelming! At lunch we had moments of crying, moments of laughter, and moments of deep reflection. One thing we did all agree upon is the need to take more time to nurture our friendships. Mattie has taught us to appreciate life and our connections. Taking the time to see and share feelings with friends is one of life's greatest gifts, and I am happy that I stepped out of comfort zone and am beginning to allow my friends back in. I asked Ellen and Christine about how their children were reacting to Mattie's death. I was deeply touched to hear how upset and sad Charlotte and Campbell were to hear the news. I certainly do not want Mattie's friends to feel upset or uncertain about life or even worry this happening to them, but I am happy to see that Mattie's life touched them so much, that they cried and asked profound spiritual questions. For example, why did God allow Mattie to die? An excellent question asked by a seven year old, and one that even I as an adult continue to explore. I thought it was interesting that Campbell asked his mom if she knew how he felt. If she ever lost a close friend when she was seven. We talked about this at lunch, and all of us never lost a friend like this when we were growing up, so in all reality we do not know what is going on in the minds of Mattie's friends, but I am very happy that children are being given the opportunity to talk about Mattie's death and to ask questions. It is our responsibility as parents to be able to talk to our children about death, and when we do not talk about these sensitive topics, they unfortunately do not go away. Children have active minds and when we do not guide them, they will come up with explanations of death on their own, explanations that could be misleading. Thank you Ellen and Christine for a lovely lunch and for giving me two new green friends. The plants are beautiful! I haven't seen plants in my home for over a year, because plants have been replaced by LEGOS (actually plants can grow molds in their soil, which could be dangerous for chemotherapy patients, which is why all plants were removed last summer)! Reconnecting with friends made me feel less isolated, and Christine told me that we are friends regardless and Mattie's death will not change that. You couldn't have said anything better to me today, that was a gift!

One thing is for certain thought, I feel no regret about Mattie's treatment and care. Peter and I were there EVERY step of the way, took an active role in his treatment, never allowed him to be alone during any part of this process, and we were always open and honest with him during this fight. We are now worn out physically and mentally, but it was worth it, because if I had even one doubt about my actions, it would weigh heavily upon me. I have no regrets about our actions, and that alone is peaceful. The one thing I encourage you to do, because I CAN'T do it, is after you read this, stop and pause, find your children and hug them. Never take for granted the time you have with them. I realize life is busy, hectic, and you may feel you can catch up on things the next day. Maybe, but here is the key point. You have your child with you, and that in and of itself is a gift that you shouldn't lose perspective on.

We would like to thank the Ferris family for a wonderful dinner. Thank you for thinking of my parents as well. You have been so incredibly generous and kind to us this year, we truly value your support. I am still sifting through e-mails and filing all of them away because your words and thoughts mean a lot to me. Within the next day or so, I will start sharing these messages with you. I end tonight's posting with a song my friend Mary Ann sent me. It is a song about friends. Mattie was a true friend for Peter and I, one whose loss has left a major hole in our hearts and lives.


Friends sung by Michael W. Smith

http://www.youtube.com/watch?v=IbPKaIozS-c